Embracing the puzzle of rare diseases: reflections on non-profit leadership and service
Embracing the puzzle of rare diseases: reflections on non-profit leadership and service Special Message to CCDS Community from Former ACD…
“Are You a 21st Century Pioneer?” – Nancy
“Are You a 21st Century Pioneer?” – Nancy Pioneer. Verb. A person who is among the first to develop or…
“CLOSED.” – Nancy
“CLOSED.” – Nancy “School closed,” says Sam for the 14th time today. I take a deep breath. If I don’t…
“Progress” – Lacy
“Progress” – Lacy My son recently said my name for the first time. I don’t mean he called me Mommy….
“Our Journey Into Medical Marijuana for Epilepsy” – Nancy
“Our Journey Into Medical Marijuana for Epilepsy” – Nancy The following is our journey into using Medical Marijuana (MMJ) with…
Creatine Decoded: Pharmacochaperoning & CTD Research Participation
Creatine Decoded: Pharmacochaperoning & CTD Research Participation This essay was written by Erin Coller with the support of Laura Trutoiu,…
“GAMT Newborn Screening Video” – Heidi
“GAMT Newborn Screening Video” – Heidi I recently had the privilege of sharing my family’s GAMT story with a group…
“A Look into My Experiences at Rare New England” – Celeste
“A Look into My Experiences at Rare New England” – Celeste If you’ve ever wondered how to get involved with…
“Creating Capacity” – Janet
“Creating Capacity” – Janet When I was faced with the CTD diagnosis of my son, who is now 10, I…
“My AGAT Story” – Christina
“My AGAT Story” – Christina The Association for Creatine Deficiencies (ACD) recently interviewed Christina, a 17-year-old senior in high school,…